Concerns of the Caregiver

Your first experience as a caregiver for a spinal cord injury (SCI) usually comes during rehabilitation (rehab). Although the rehab team takes the lead at this point in your loved one's recovery, you can help by:

• Visiting and talking with him or her often. Find activities you can do together, such as playing cards or watching TV. Try to keep in touch with your loved one's friends as much as possible, and encourage them to visit.
• Helping him or her practice and learn new skills.
• Finding out what he or she can do independently or needs help with. Avoid doing things for your loved one that he or she is able to do without assistance.
• Learning what you and your family can do after your loved one returns home. This may include assisting him or her with the wheelchair, getting to and from the bathroom, and eating.

After rehab

Before your loved one returns home, a decision has to be made about who is to be the main caregiver. You or another family member may feel you should be the main caregiver. But there may be reasons why this could be hard, such as:

• Your own health, which may limit what you can do to help.
• Your job, which provides all the income for your family and leaves you with limited time.
• Your own doubts that you could handle taking care of someone who has an SCI.

Discuss with the rehab team what it means to be a caregiver. They can help you see what the full impact of caring for someone with an SCI will be. And if you cannot be a full-time caregiver, the rehab team can help you find a nursing home, assisted-living facility, or in-home help. They can also give you training in helping your loved one, even if you are not the full-time caregiver. You may need to help him or her do exercises, move in and out of the wheelchair, and get dressed, for example.

Whether or not you are the main caregiver, you need to attend to your own well-being.

• Don't try to do everything yourself. Ask other family members to help. And find out what other type of help may be available.
• Take care of yourself by eating well and getting enough rest.
• Make sure you do not ignore your own health while you are caring for your loved one. Keep up with your own doctor visits, and make sure to take your medicines regularly, if needed.
• Locate a support group to attend. Support groups may be able to offer advice about insurance coverage too.
• Schedule time for yourself. Get out of the house to do things you enjoy, run errands, or go shopping.

Communicate

Whether or not you are the main caregiver for your loved one, living and/or caring for him or her can be both rewarding and difficult. Watching someone deal with such a serious injury can be painful but also inspirational. Sharing the small and large victories can provide a shared pleasure and forge a stronger relationship. But setbacks and "bad days" can be frustrating and traumatic.

You may feel:

• Afraid that your loved one will start to have complications, such as pressure sores, and you will not be able to help.
• Afraid that you will not be able to accept or overcome disabilities and are not prepared for the responsibility of caring for someone who has an SCI.
• Depressed over losing the lifestyle you previously enjoyed with your companion.
• Worried about the costs of rehab and loss of income.
• Frustrated with your perceptions. For example, you may feel you do not have enough time for yourself, or you may just feel overwhelmed.
• Frustrated with your loved one's perceptions. For example, you may feel he or she is overly negative or worries too much about having to depend on others.

The key to working through frustrations is communication. It is important that both you and your loved one talk about what bothers you and about what your expectation are. Remember that in a sense you are in a "new" relationship: roles in your family may have changed dramatically. Discuss what you are feeling about the changes and explain them. This can help you understand each other's needs and foster a healthy relationship. Always remember that love and support are key to your loved one's recovery and to your well-being as a caregiver.